Today was treatment plan review time again. This inevitabley means that my diagnosis needs to be reviewed too. Last September, this meant a change of diagnosis from dissociative identity disorder and PTSD to borderline personality disorder. I also have a diagnosis of autistic spectrum disorder or Asperger’s depending on which professional you ask. The details of this diagnosis – whether it’s Asperger’s, autism spectrum disorder, or something else along the spectrum entirely -, don’t bother me. What does bother me is the constant questioning about whether I truly am autistic or all my difficulties are normal for someone who is blind.

I have read a fair amount of information on this, and it is true that blind and autistic people display overlapping behaviors. For example, many blind children (but not most adults) flick their fingers in front of their eyes or rock back and forth. These “blindisms” are also common in autistic people. Blind people also can’t use visual cues to communicate. This led my therapist to assume that all blind people are clueless about for example sarcasm used in speech. Generally, it is recommended that the criterion on non-verbal commnication be left out of the equation when deciding whether someone who is blind meets the criteria for an ASD.

I don’t care about this single criterion as it isn’t the only one in the diagnostic manual. What I do care about, is when underlying mechanisms of autism are attributed to all blind people. For example, my therapist said that all blind people have trouble keeping sight of the big picture. This may be so to a certain extent, in that all blind people again miss visual cues, but it isn’t like all blind people have no clue how to generalize daily living skills from the training facility or parental home to the independent living situation. My support worker, who had extensive experience with blind people, told me when I moved into independent living from her training home that I could obviously clean my apartment, as “a bathroom is a bathroom”, etc. To me, it certainly isn’t. Similarly, most blind people beyond early childhood don’t get overwhelmed by noise. This again led to a horrible misunderstanding when I, early in my independent living experienece, had a meltdown over a fire truck driving by.

Now I don’t care what my diagnosis is as long as I get the right support, but this is exactly where questioning my autism diagnosis is problematic. People with only a mobility or sensory impairment cannot get support. They can get a housekeeper, but they can’t get anyone to help them organize their lives or navigate social or practical situations.

A general rule is that, if normal strategies for the blind do not work, there has to be something else going on. I’ve lived in enough facilities for the blind to know my behavior clealry isn’t normal for a blind person. In fact, it was the staff at the training home who first sought an autism evaluation for me. They didn’t seek this for all their clients. In the end, my current therapist also left the diagnosis untouched, but I get sick and tired of constantly having my needs questined. Of course, I know I truly have “preemie syndrome”, a constellation of neurodevelopmental problems commonly associated with premature birth, but this isn’t a formal diagnosis and won’t ever be one.